The MRI went OK but seemed long

A couple of weeks ago, I posted about speaking with my MRI results with a neurologist. Since that post, I’ve had a few followers of the blog ask if I could document how the actual MRI of my head went. I can understand why they are requesting it. Going into a new type of scan can cause scanxiety. In this post, I will document what happened on the day of the MRI.

No prescan requirements

It seems a lot of procedures we cancer patients go through have conditions to meet. Most typically, we might be required to fast or refrain from eating sugary foods. For the MRI, there were no dietary restrictions given. The only restriction given to me was to refrain from wearing any clothing with metal in it. That was simple enough of a requirement to meet.

Filling out the paperwork

After being brought back to the scan area, I had to fill out a piece of paper. From what I remember, this was confirming my history with scans, medications, and anything metal in my body. At the time, I still had the port in my chest, so I think that was the only thing I had to note on that paperwork. 

Removing all metal

I was then put in a changing room with lockers and asked to remove any metal. That day I wore sweats, a hoodie, and flip flops (which I wear year-round). None of these items had metal in them. Those who do wear clothing with metal would have to take them off and wear a hospital gown. I didn’t want to wear a hospital gown, hence why I made sure I wore no metal. In my case, the only metal I had to take off was my glasses and the dental flipper device in my mouth.

Prescan conversation with tech

Before getting into the MRI, the tech let me know how the procedure would go. She said I would have to lay perfectly still the whole time for them to get a sharp image. About halfway through the process, she said I would get an injection of contrast via a needle. I was thrilled to hear a needle would be used to administer the contrast. I remember a previous scan (I believe it was a CT) where the contrast had to be taken orally, and I didn’t enjoy that at all!

She also said the machine would be very loud. This noise, she said, is caused by the magnets inside the machine. I was given a pair of earbuds and asked what kind of music I wanted to listen to (classic rock). Then she laid me back, and I was brought into the machine.

The first half of the scan

Actually, there isn’t much to report about the scan itself. I am not claustrophobic, so being inside a small tube didn’t bother me. I could, however, definitely see where someone afraid of small spaces would hate having an MRI done.

Even though the tech had warned me about the loud noises made by the MRI, I wasn’t adequately prepared for just how loud it would be. The MRI creates a large variety of sounds as it goes through its cycles. Some of the noises are so loud I could almost feel my eardrums being pounded. It is a wonder I didn’t come out of the MRI with a massive headache.

I believe the first part of the scan took about twenty minutes. Other than the loud noises, there isn’t much to report. It’s just a matter of laying still. Once in a while, the tech would say something through the headphones, I don’t remember much of what she said.

The second half of the scan

Upon completion of the first half of the scan, I heard the tech tell me I would be brought out of the machine for the contrast. She still wanted me to stay still during this process, or at least keep my head still. After injecting me with the contrast, she stuck me right back in the machine.

I think the second half of the scan took about the same amount of time as the first half. Part of me remembers hearing the tech say this part was shorter. But it didn’t seem shorter to me. By this time, my joints were starting to get sore from not being moved. I’m a person that has restless leg, and honestly, it takes a lot for me to keep still for twenty minutes at a time.

But I got through the second half of the scan OK. After the tech moved the bed out of the machine, she helped me slowly sit up. After a minute or two, she then helped me to stand. She explained this had to be done slowly because people will often fall after getting done with these scans. Falling is especially frequent if people try to stand right away.

I had to wait around for just a few minutes while someone verified the images were adequate. After getting the word, I was released and went off to the waiting room to let my wife know we could get out of there.

It was just a scan

A lot of people going into various types of scans often get scanxiety. Of course, a lot of that scanxiety is caused by worrying about the scan results. But after speaking with enough people, I’ve found many people (including myself at various times in the past) get a fair amount of anxiety about the scan itself. Hopefully, by sharing how my MRI experience went, it will help others relieve any scanxiety they have about getting an MRI.

Song of the day: Basket Case

I believe I have featured this song before as song of the day. I just can’t help but think of this song when talking about scanxiety. I was never a huge Green Day fan, but this is a good track.

Bonus Song: Everlong

Since I’m in a 90’s alt rock mood I might as well bring out this great track from the Foo Fighters. The scan seemed to take forever in the second half, which brought this great track to mind.

Dealing with constant tests and procedures

Some days I feel like a pincushion.

One aspect of having cancer is dealing with constant tests and procedures. Even being in remission does not seem to slow down the constant scans, blood draws, and incisions. Actually if anything it appears to be worse after chemo has stopped. In this post I will briefly share my experience dealing with the constant tests and procedures.

It seems the doctors constant want to scan or poke me

Prior to getting cancer I would rarely go to the doctor. Like many people I really don’t like going to the doctor unless I really need to. People like me tend to get somewhat overwhelmed once we have cancer and have to make constant trips to the hospital and clinic.

During chemo I was obviously at the hospital a lot. But even after chemo was completed I have had a lot of visits to the clinic to have scans or be poked. Below is a list of visits to the hospital and clinics I’ve had over the last six months since completing my chemo. Each of these visits was for a scan or to be poked.

  • PET scan to ensure I was in remission
  • Bone marrow biopsy
  • Second bone marrow biopsy due to the first one not working
  • X-Ray of chest due to breathing issues
  • X-Ray of neck/chest to see why port was not working
  • Ultrasound of neck to check on growth on neck
  • Biopsy of neck to check growth on neck
  • X-Ray of teeth due to abscessed tooth
  • Extraction of two teeth
  • Overnight sleep study at hospital
  • Second overnight sleep study at hospital
  • X-Ray of chest again for breathing problems
  • Ultrasound of lump on shoulder
  • Removal of large lump on shoulder
  • Removal of stitches from shoulder surgery
  • CT scan of chest and CT scan of abdomen to ensure I’m still in remission

The above list is the test and procedures I can remember off the top of my head (my hospital chart app won’t let me log in right now to see what ones I’m forgetting). It does not include the many doctor visits dealing with those tests and procedures. The list is also missing the maintenance infusions I receive every eight weeks (today happens to be another maintenance infusion day).

Not wanting to tell the doctor when something new comes up

All of these scans, tests, and procedures tend to get overwhelming. It has gotten to the point where I become very apprehensive about mentioning any new symptoms or issues I am having. I’ve spoken to many cancer patients who feel the same way. Just one little comment or question seems to lead to a new scan or procedure.

It’s not that I don’t understand that these scans and procedures are important. I really do. But nonetheless they do become overwhelming. It feels as if I spend more time at the clinic and hospital than I do spending time with my kids.

Stress added to family

It is not only me who feels additional stress from these constant tests and procedures. This spring my wife had a heart attack for the second year in a row. There are many factors in her hear condition, and stress is obviously one of those factors. Having to bring her husband to constant tests and procedures increases the stress upon her. Then of course there is the stress she feels waiting for the results of each test. I would say it is probably even more stressful for her than it is for myself.

My kids also have additional stress added to their lives with these constant tests. The boys try to hide any worry they have. Yet I have noticed they get more clingy and attentive after I’ve had procedures done. As a parent I can tell they are worried and trying their best to help me. I truly feel bad about putting so much stress on my boys, especially the younger ones.

Things likely won’t change

As I conclude this short post, I can’t help but feel things will not change going forward. I’ve spoken to many patients who have lymphoma spread throughout their body and bones like I have. For many of them the constant tests and procedures never slow down once remission has been reached. A large part of me feels I will be one of those patients that will constantly be visiting doctors until the day I die.

Don’t get me wrong though! I am very happy to be alive and will do what I need in order to remain alive. But that doesn’t change the fact that the constant scans and procedures are wearing me down.

Today’s Song: I don’t need no doctor!

For today’s song I go back to a classic track from Humble Pie. This song often goes through my head when I get tired of the constant scans and procedures. The song also reminds me of how much I really just want to be with my wife.

Bonus Track: Under the Blade

Today’s bonus track goes back to the 80’s with a song from the hair metal band Twisted Sister. This song is a bit heavier in style than what I normally share on this site. But the song has to do with dealing the anxiety of going into surgery (and not about suicide as it had been wrongly accused of back in the day).

PET Scan results posted and they look good

Doctor thinks the computerLast Friday I posted about my scanxiety related to waiting for my PET scan results. Originally I thought the wait to see the results would last until Tuesday (tomorrow) when I see my oncologist prior to chemotherapy. Luckily though I was able to see the results of my scan this weekend as they were released to my chart. After reading the results I can say that I am very happy with my response to chemo.

Here is part of what was posted in the lab results part of my online chart:

IMPRESSION:
1. Compared to prior PET/CT 9/5/2018 widespread nodal involvement above and below the diaphragm, splenic and widespread skeletal involvement in the axial and proximal appendicular skeleton have regressed in size and metabolic activity is now normal. This is consistent with a complete metabolic response to therapy. Previously the patient had level 5 disease on the 5 point system and this is returned to level 2 disease of the 5 point system

I put a few sections above in bold lettering. If I am reading this correctly it means I have been responding very well to chemo. It was such a relief to read this. The thought of not responding to chemo and having to start over with a new chemotherapy regiment with a whole different possible set of side-effects was stressing me out. Actually part of me hopes this means I won’t have to do all eight rounds of chemo. Currently I am scheduled to have six to eight rounds of chemo. I’m hoping my response to chemo means I will be able to stop at six rounds. But that will be up to the doctor to determine. Either way I’m happy with what I read.

There are still some trouble areas in my report. But the main area of concern was noted by the imaging doctor as “likely benign”. Also I seem to have developed sinusitis since my last PET scan. I’ll talk to my oncologist about these results tomorrow and see if there is anything that has to be done. Right now I really can’t say I’m worried about them at all.

I am also looking forward to actually seeing my whole scan tomorrow. The online chart does not give me access to see the scan, only the results of the doctor that reviewed the scan. The first scan reminded me of a large fireworks display, hopefully this time it looks more like kiddie fireworks. Plus I know it will relieve a lot of stress from my wife if she is able to see the cancer receding.

Tomorrow I have round four of chemo. I’ll probably do a post prior to my doctor appointment and receiving chemo because I am usually to tired to do any post afterwards (that shot of Benadryl really puts you under). That means it will likely be Wednesday or Thursday before I post about seeing my actual PET scan. Hopefully it looks as good as I think it will!

Waiting for the results of the second PET scan

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The PET scan machine I was in looks similar to this, but has a much longer tube the body goes into.

On Wednesday of this week I had my second PET scan done. I didn’t blog about it at the time because I was feeling somewhat under the weather due to fall allergies. In this post I will share how this experience went and some of the scanxiety this has caused me.

My first PET scan was done about two months ago. At the time I just got my biopsy result and found out for sure I had cancer. Leading up to that first PET scan I had a lot of anxiety, also known as scanxiety. This time I don’t recall having any scanxiety prior to the PET scan, but now that I have to wait for the results I definitely am being impacted by scanxiety.

Before going into the scanxiety let me back up and share my PET scan experience this time. Two days leading up to the PET scan I was on a high protein diet. About 45 minutes prior to the scan I was injected with a glucose solution that contains radioactive material. It is because of this radioactive material that most people will not want to have a PET scan done unless absolutely necessary. Interesting side-note. The tech said the actual injection solution was made down south (I believe in Omaha) and is shipped to Sioux Falls. In Sioux Falls the solution is put into the doses needed for that day and couriered to where it is needed, in this case three hours away in Aberdeen. I believe he said the half-life of the radiation in the solution is 110 minutes. This solution travels quite a bit just to be used in these PET scans. Oops, time to get back on track and focus on the PET scan.

I was on the PET scan bed for just over a half-hour, but the scan itself only lasted for about 25 minutes. My scan went from about half-way down the head to my thighs. Since I am so tall (6’3″) my scan takes longer than people of a normal height. I actually kind of enjoyed the scan for the first half. The bed/table shape feels good on the back and a wedge is used to allow the knees to be bent. About halfway through the scan though my left knee locked up and was in pain for the rest of the day. This might be due to an old injury, or maybe due other factors. It is hard to say.

After the scan my wife and I went out to eat. My scan was in the afternoon and I had been fasting all day for the scan and I was hungry as heck. By the way, mid-afternoon is a great time to go out to eat if you are a chemo patient. We basically had the restaurant (Ruby Tuesdays) to ourselves. I didn’t wear a mask and it felt good to be going out.

The last time I had a scan we saw the results shortly afterwards during an appointment with the oncologist. That was when I first saw the fireworks. Now this time I have to wait almost a week for the results. My next scheduled appointment with the oncologist is next Tuesday during my fourth round of chemo. I didn’t think waiting for the results would impact me, but the waiting is definitely causing me some anxiety. This PET scan will show if the first three rounds of chemo are actually working. If the chemo isn’t working I’ll likely have to switch to another blend of chemo drugs. Chemo drugs are nasty and can have some horrendous side-effects. I know and can deal with the side-effects of my current chemo regiment, known as R-CHOP. The thought of chancing worse side-effects is actually causing me quite a bit of anxiety.

It of course didn’t help that both my wife and I saw a preview of the scan. From our untrained eyes the scan does not look any better than it did two months ago. Actually it appears there may be a new bright spot. Wondering if my cancer has spread or has changed from a grade 2 lymphoma into a grade 3 lymphoma is definitely causing me some stress.

Between now and Tuesday I am trying to keep my mind occupied in the hopes to keep my scanxiety down. So far it isn’t working very well and my anxiety seems to increase each day. Hopefully on Tuesday the Oncologist will let us know the chemo is working as planned and I can continue my R-CHOP regiment to push this lymphoma cancer into remission.

Biopsy result and the PET scan

22299417Last post I blogged about my biopsy experience. In this post I will briefly blog about getting the biopsy results and about getting a PET scan. Also I will lightly touch on some anxiety I had leading up to the PET scan.

Thursday, August 23, is when I had the biopsy done. As I noted in the last post, the radiology doctor had let me know it would be three to five days until I got the biopsy results. I really didn’t do much that weekend as I waited for the results. My breathing had gotten worse so I basically just hung out with my family. I don’t recall being nervous about the biopsy results; it didn’t seem to matter at the time.

On Monday, August 27, I received a call from the doctor. He asked if I wanted to come in to get the biopsy results. I opted to receive the news over the phone. The doctor let me know I had a type of non-Hodgkin’s lymphoma type called follicular lymphoma. He let me know the hospital would be in contact with me to set up a PET scan. My doctor asked me if I wanted to come in and talk about it. I didn’t do so. This probably should have been a big moment for me. It really wasn’t. I don’t remember feeling much of anything. At this point I had done enough research to know follicular lymphoma was not curable, but could be pushed into remission. I believe I was somewhat relieved it was a slow-growing type of cancer.

Later that day I got a call from the hospital to set up an appointment for the PET scan. The hospital I go to does not have a PET scan. Every Wednesday a truck comes from Sioux Falls to do scan. Since the PET scan was fully booked for that week, they asked if the following Wednesday would be ok. That mean waiting just over a week for a PET scan. I said that was OK and set up an appointment for the afternoon of Wednesday, September 5.

During that week many people asked me why I didn’t push to get the scan sooner. I really didn’t see a reason to. Yes, I did have options to get a PET scan sooner, but I really didn’t want to travel for a scan I could just wait a week to get locally. Also during that week my breathing continued to get worse. It was during this week that I experienced something I now know is called scanxiety. I won’t go into scanxiety at this time since I have it planned as a separate post in the future. All I will say is that as each day went on I wished I had gotten my PET scan sooner just to relieve the anxiety I was experiencing.

I did take one day “off” during my wait in order to take my little boys to the State Fair. I basically watched the free shows at the Freedom Stage while the boys played on the carnival rides. For a day I actually felt like I was able to do something for my kids and that helped to relieve my anxiety temporarily.

On the Monday before the PET scan I began the high protein diet required of me. Part of my scanxiety caused me to forget whether I was supposed to be on a high protein diet for 24 or 48 hours. That caused me to opt for doing 48 hours of high protein diet. Incidentally it was only asked to do so for 24 hours.

The other thing that caused my anxiety to raise was the fact my fall allergies decided to kick in that Monday. As part of this I was coughing even more than normal. I went on Claritin that Monday, which should mean it would be fully effective by scan time. But that didn’t stop me from worrying about coughing during the scan and possibly ruining any scan results.

Wednesday came and I was getting even more nervous about my scan. When I got a call from the PET scan technician asking if I wanted to come in an hour early I practically jumped for joy. Going early meant I could just get the damn scan over with.

Despite all the anxiety I had, the scan itself was very uneventful. The tech took my blood to ensure my glucose levels were low. I have a post coming up to explain why glucose levels are important for a PET scan. After the tech injected me with the tracer drug I just sat around visiting with the wife and with the tech for a while. He was a very interesting person (in a good way) and will also likely be the topic of a future post.

The PET scan itself went quicker than I thought it would. I laid down on a table similar to the one used for a CT scan. As time went on the table slowly moved me through a tube. Despite my anxiety leading up to the scan, I went the whole time without one cough. The scan tech had some good music on in the background and I focused on that music to get me through it. All-in-all I found the PET scan to be a non-event.

When the scan completed the tech let me know he would have the images prioritized by the staff in Sioux Falls. This was due to the fact I had an appointment with my oncologist later in the afternoon. Looking back I still think I let my “scanxiety” get way too bad for something that ended up being no big deal.

I’ll end this post here. In this post I mentioned getting my biopsy results, waiting for the PET Scan, and actually going through with the PET scan. One common theme in this post was me going back and forth between seeing things as non-events and suffering anxiety. There really didn’t seem to be any middle ground. Next up in this series of blogs will be two posts about my visit with the oncologist.